[hcmiller92]

Every time I get into one of these forums, I see all the posts about thymectomy. After I give my usual rant, I get thrown off, privileges revoked permanently. Quite frankly, I don't give a ****. Somewhere in all of this there needs to be a reality check.

Thymectomies don't work. Period. No cause and effect has ever been demonstrated and this is a violent piece of surgery, causing irreparable and unnecessary scarring.

I can say this because I have returned from the death bed from MG. Most of you have never - and will never (and thank God for that) - ever, ever get anywhere near as bad as I've been. I was in the lowest decile (or highest , if you wish) for severity of MG. Dead is the next level.

Oh, sure, my neuro tried pushing the idea at me for awhile, but realizing that I had also gone to medical school for awhile (I like finance better) and had done all the undergrad chemistry, so I could be conversant with him and carry on a responsible conversation about the therapies, he dropped the whole thing. I am now almost 100 percent recovered. Time was I couldn't even eat, couldn't walk, couldn't swallow my meds. I would fall off my shuttle bus and land on the sidewalk on my way to and from work every day. And I never missed work, except for when I was in a coma last year (from MG) and when they ripped my sigmoid colon out last fall because of diverticulitis. Even when I did have two major abdominal surgeries, I was back at my desk at work immediately after they let me out of the hospital. They didn't want me driving but I had my car in the parking garage at the hospital and went straight to my desk at work two miles away and 96 hours out of surgery. I'm a tough son-of-a-*****. And you need to be tough to beat up on Mr. MG and get rid of him. He's public enemy number one.

I have never even had a CT scan to look at my thymus. I'm sure I've got one, however.

Don't buy into the popular wisdom or the ****** advice with the ****** science behind it about thymectomy as a treatment for MG. It isn't. Those snake oil charletons are on a slippery slope and instead of giving you enough of the correct drugs to make you better, they offer up a stupid solution that rips you open, cracks your sternum and causes terrible pain in recovery (YMMV). Do go get it out if you have cancer, but not because you have MG.

I may only be given the opportunity to bring this message to you once, so heed it well.

Love you all!

Curt

[Brennan068]

Sorry, you're wrong (at least in my case.)

I had a thymoma which would not have been discovered if not for the CAT scan. They would not have determined that it was cancerous if not for the thymectomy and biopsy. They cannot do needle biopsies of thymomas because if they are cancerous, they seed the needle path with cancer cells that are very prone to rapid growth. If it had not been removed, it would have grown beyond the capsule more than it had and I'd quite likely have cancer throughout my body now.

My thymectomy saved my life.

Since my thymectomy, my ptosis is gone, my marble mouth (caused by partial paralysis of my tongue) is gone and my swallowing is significantly improved. I am on mestinon, but do not take time release at night, I am quite able to see the difference in the morning compared to before my thymectomy.

You may not believe they improve quality of life for MG patients; however that is a decision between individual patients and their healthcare team. I'm very glad I listened to the advice of mine. There is a significant percentage of people whose MG improves post thymectomy; granted it is not 100% but it is still significant.

Brian.

[AnnieB3]

Curt, You are obviously very passionate about this topic. I completely understand where you are coming from. Though, no one knows what it is like to walk in anyone else's shoes.

Brian, I'm glad you had such success with the thymectomy. It's great to hear stories like yours.

Medicine is not an exact science. Remember blood-letting? Well, some people still do it for hemochromatosis and it works for them! There are probably lots of examples, like thymectomies, where people are not going to agree on whether or not they are useful or even "humane."

All treatments for MG involve some kind of drawback or risk. But it's up to each individual to decide for themselves what to do.

Curt, you have the right to your opinion. Just don't expect everyone else to have the same one!

I think it's important to support anyone, no matter what their opinion or what they are going through. Life is really rough on so many of us. And stress doesn't exactly help MG. Can we discuss this without hurting each other? That would be good.

Annie

[Chemar]

Originally Posted by hcmiller92

Every time I get into one of these forums, I see all the posts about thymectomy. After I give my usual rant, I get thrown off, privileges revoked permanently. Quite frankly, I don't give a ****. Somewhere in all of this there needs to be a reality check.


I may only be given the opportunity to bring this message to you once, so heed it well.

Love you all!

Curt

hello Curt

we are a very welcoming community here and we sure believe in giving everyone a voice to express their opinions, but not to drown out others

we have a large community representing many illnesses and a very diverse membership. if you spend a little time getting to know members you will find that some may benefit from treatments that others do not. People are different and their responses to the same treatment are often very varied

so where we encourage members to share their experiences, we also ask them to respect others in doing so



thanks

[hcmiller92]

Hey Brian - that's the one exception I made loud and clear. Where a thymoma is present, thymectomy is absolutely necessary!

Originally Posted by Brennan068

Sorry, you're wrong (at least in my case.)

I had a thymoma which would not have been discovered if not for the CAT scan. They would not have determined that it was cancerous if not for the thymectomy and biopsy. They cannot do needle biopsies of thymomas because if they are cancerous, they seed the needle path with cancer cells that are very prone to rapid growth. If it had not been removed, it would have grown beyond the capsule more than it had and I'd quite likely have cancer throughout my body now.

My thymectomy saved my life.

Since my thymectomy, my ptosis is gone, my marble mouth (caused by partial paralysis of my tongue) is gone and my swallowing is significantly improved. I am on mestinon, but do not take time release at night, I am quite able to see the difference in the morning compared to before my thymectomy.

You may not believe they improve quality of life for MG patients; however that is a decision between individual patients and their healthcare team. I'm very glad I listened to the advice of mine. There is a significant percentage of people whose MG improves post thymectomy; granted it is not 100% but it is still significant.

Brian.

[hcmiller92]

Chema - this is precisely the mytholgy that needs to be replaced with reality. People with MG DO NOT respond differently to treatment. The reason this notion is so pervasive is because they are all treated differently with the same drugs (or combos). The literature is replete with support for this comment.

Originally Posted by Chemar

hello Curt

we are a very welcoming community here and we sure believe in giving everyone a voice to express their opinions, but not to drown out others

we have a large community representing many illnesses and a very diverse membership. if you spend a little time getting to know members you will find that some may benefit from treatments that others do not. People are different and their responses to the same treatment are often very varied

so where we encourage members to share their experiences, we also ask them to respect others in doing so



thanks

[Chemar]

once again...that is only your opinion Curt, based on your experience

others here see it differently based on *their* personal experience.

please show respect for that.

thanks